With Crohn’s You Can’t Afford to Be the Squeaky Wheel in a Broken System

When medical staff send the wrong prescription and render your current prescription useless, you run the risk of falling off your treatment plan and becoming sicker. If you lodge a complaint with management, it may not be taken kindly. Imagine receiving a letter stating that you can no longer receive treatment from your specialist because you spoke up about the wrong prescriptions. It is happening more and more. With Crohn’s, you cannot afford to be the squeaky wheel in a broken system.

Earlier this year, I wrote about losing my IBD specialist, more than once, and how I have a backup gastroenterologist. With inflammatory bowel diseases like Crohn’s disease, ulcerative colitis, or Crohn’s colitis, it’s important to have a good specialist. You can imagine the grief, frustration, and anxiety-induced when facing the loss of another specialist. Over the years, I've entered a few practices where the staff continually botched prescriptions.

This is a conundrum as an advocate. Where I live, doctors and specialists know that I speak about IBD online, at conferences, and on panels. I also attend appointments when they need added support. This advocacy work has afforded me a small level of respect with some medical practitioners. But that doesn’t mean I have sway, and I never try to rock the boat. Also, where I live, hospitals, medical practices, and university systems like to fire patients if they are a squeaky wheel.

Handling situations that arise with doctors

Sadly, I’ve seen all kinds of patient-firing scenarios come up. It’s not just friends, either. There are online acquaintances, friends of friends, and stories that float throughout the cyber patient world. To say that I am on-edge with how I handle a problematic situation at a doctor’s office is an understatement.

My advice to anyone who is listening is to not become the squeaky wheel because the system is broken.

A friend in the mid-west cannot be seen at a particular hospital because of their mistreatment of her case. She went through the proper channels to file a grievance. Their response was she could no longer be a patient at that hospital. Not just a doctor’s office, a hospital.

Recently, I joked in a Twitter Chat that Florida is a medical wasteland and I need to move. I was only half-joking. But at the beginning of the year, my specialist moved out of state to a more lucrative institution setup.

Another situation I’ve run into far too often is that the specialist is part of a medical group that is poorly run. We need gatekeepers as our best friend, but some turn out to be your worst nightmare. If you don’t have them on your side, everything goes downhill. And if you make the mistake of being the squeaky wheel, you might as well kiss being able to be seen at that practice goodbye.

The most recent situation I’ve witnessed happen to a friend is the kiss-off letter. They raised too many red flags with complaints about billing, staff, appointments, wrong prescriptions issued. These things are not their fault for happening, but it is their fault for being the squeaky wheel. They got a kiss-off letter.

My mother is not an IBD patient. However, she is a cancer patient. During the past few months, she’s caught a decent amount of mistakes made at the cancer center. I asked her today why she won’t make a complaint or speak up. It’s for the same reason I’m writing this now. Being the squeaky wheel does not pay off.

If you get kicked out of a premier cancer center, it's not like there are many to go around. My Mom has heard the stories and recently witnessed it occur to a few friends.

Fear of a new doctor's office

My IBD specialist left a problem practice and entered into a new one. This new-to-me practice has its own fair share of issues that I’m aware of and leaves me weary. I haven’t yet scheduled an appointment there, but I do know that my local GI who handles my general issues wants me established with a specialist somewhere. With known problems existing at this new office, I do fear that I'll become the next squeaky wheel.

At the old practice, the person in charge of prescription writing and refills wrote my prescription wrong more than once. It took quite a few phone calls and emails, but I was able to have the prescription corrected. Others were not so lucky and it made their conditions worsen. We worried about raising too much noise because we needed the Crohn’s treatment let alone the prescriber to issue it.

A fear of mine is missing a treatment date due to a prescription mistake and falling out of remission. Could I hold it together without rioting in their office?

I don’t know. I truly do not know.

Ways to handle these situations

What I do know is what myself and some friends, with Crohn’s disease, who are in the same position, are proactively doing. We have taken to the Crohn’s and ulcerative colitis groups to talk to our peers and gage where they are, who they see, and to see if they know anyone in our areas.

The advice I hate to give people is if something happens that isn’t lawsuit worthy, take a deep breath and let it all go. Come and complain to us; your peers. Write it out in a journal, and let it go. If you truly feel like you need to say your piece to management, make sure you are prepared to face the consequences of these actions. Getting fired as a patient from a practice or hospital is no joke.

And now for the realistic words of advice: If you if have to be the squeaky wheel, have an IBD specialist plan B, C, and maybe even a D in your arsenal.

Have you received a kiss-off letter from a specialist’s office or hospital? Let’s talk about it. You are definitely not alone.